Posts: 1 to 25 of 107

Topic: Liver Infusion Pump?

Hi:I've been reading thru many of these posts, and first off, I have to say I can't believe how strong some of you are! I'm still working on that part. It's all so new still, and staring my mortality in the face isn't getting any easier yet.That said, many of you are also giving me hope that something can be done.I have chosen a "safe" path at present, but one which I hope works for me. I was recently under the care of a doctor at Drexel University/Hahnemann Hospital in Philadelphia. I did not care for the odds he gave me for a successful operation, so I went to Dr. Fong at Sloan Kettering. He has told me that at present an operation would not be successful as the tumor has wrapped itself 3/4 around my vena cava. His suggestion is the Liver Infusion Pump which will pump chemo directly to the liver and be contained within the liver. This will hopefully allow me to continue a "normal" life, while hopefully shrinking the liver so it will become either operable or small enough for another treatment option. This pump will also allow me time to make other decisions in the future. I pray daily that it will work enough to make the tumor operable or at least allow for another option.I was just wondering if anyone else has had any dealings with the infusion pump and hoping to get some good feedback.Thank you,Kris

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Liver Infusion Pump?

Thanks GavinI have the info from the one that you sent me, and, like you, was unable to find much information online about the pump. I know Mem Sloan Kettering is big on new developments, so hopefully that's why I can't find much. I just pray every day that I made the right decision. I know we all do: no matter which decision you make there's always that thought that "maybe" there was another option.Kris

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Liver Infusion Pump?

Tuesday is my surgery. Dr. Fong will be surgically implanting the hepatic liver infusion pump into my abdomen so I can have chemo directly pumped into my liver and the tumor. The hope is that the tumor will shrink away from my Vena Cava so we can operate. Failing that, Dr. Fong has suggested other alternatives after the tumor shrinks enough. We might try cryogenics or another form of confusing, killing or disrupting the tumor. There are so many options out there.I will have 4-6 weeks of recovery time... my chemo will start 4 weeks in. Dr. Fong is hopeful that within 4 months we will see improvement. My hope WAS that I would be better by my birthday in June (that was before I found out what cc was all about). My hope now is to be clean by my NEXT birthday!I hope and pray every night that I have made the right decision by going a different route than everyone else seems to do. But my tumor was caught fairly early, so I'm hoping these other options are still options for me. I would LOVE to post this under good news in about 4 months! Look for me there!Kris

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Liver Infusion Pump?

Kris, I am praying so hard for you for a successful Tuesday! With an attitude like yours, you can't lose! This time of year is for new beginnings and we will be cheering for everything to come up roses for you. You are the little engine that could. Go Kris go! Go Kris Go! Bottom line is I want that Birthday Gift for you as well. :)

Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Liver Infusion Pump?

Thanks Lainy. Maybe I'll even be able to try the cyber knife in the future!

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Liver Infusion Pump?

Kris....good luck on Tuesday. Although, you are the first on our site, the liver infusion pump has been around for some time. These people are out there but, they don't seem to post on our discussion board. Hopefully someone will read this posting and chime in soon because, any experience shared makes for a better understanding and comfort. But, you know that we are thinking of you and can't wait to hear from you.All my best wishes,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Liver Infusion Pump?

Hi Kris,

Thanks for letting us know about your surgery on Tuesday. I so hope it goes well and I will keep everything crossed for you! Please keep us updated on how things go for you, and I look forward to reading about it all in the good news section!

My best wishes to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Liver Infusion Pump?

It's been a while since I wrote. I had the surgery on April 19th, where they removed my gall bladder and inserted the Codman pump. 10 days in the hospital because I ran a fever the first few days. Since then it's been nothing but test after procedure after test... Basically the pump is surgically inserted into the left side of the abdomen and "tacked" into the abdomen so it is fairly stable. It weighs about 4 oz. It runs a catheter to the liver, where the veins and arteries have hopefully all been sealed off so the liver is self-contained. Then it pumps strong chemo into the liver and if it does it's job, it shrinks the tumor so it becomes operable.Unfortunately, my veins and arteries have not sealed off. I have had 2 pump tests (testing to see if the arteries and veins leak) and one failed embolization. Embolization try #2 is tomorrow morning. It's been 3 weeks and I haven't gotten any closer to fighting this tumor. It is getting really scary and frustrating.

Kris

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Liver Infusion Pump?

Kris, Please don't loose hope! You are with an excellent doctor and 2nd time hopefully will be a charm. Good luck tomorrow and know that we are all thinking about you and sending all our prayers and good wishes your way.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Liver Infusion Pump?

Friday didn't work again. Suggestion from the radiologist is that the original surgeon has to go back in to block off a couple of arteries or veins that are too large for her. But the artery they are using to feed the catheter into the liver seems to be narrow. Don't know if he picked a bad choice for this? I don't like not knowing I don't know when this next surgery will be, I don't know if it will work, I don't know if this pump will EVER work, and I don't know if I will EVER get chemo started. I wonder how large the tumor is now.I just really need some answers and for thie breatment to begin. I am getting so frustrated.

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Liver Infusion Pump?

After a number of weeks of trying to get the body to cooperate so I can use the liver infusion pump, we decided to start systemic chemo. Because the cancer had spread to the surrounding lymph nodes, and another surgery would mean postponing the fight another 2 or 3 weeks, I totally agreed with my oncologist. So we started me on Gemzar and Oxaliplatin. After 1 chemo treatment, I am getting a port. Veins weren't built for that kind of abuse.Side effects were minimal compared to what could happen. So I am very happy to have started fighting. Maybe eventually we will feel able to stop the chemo for a few weeks so I can have the surgery to try to get the pump working. It's still frustrating that I have this weight in my left abdominal cavity that isn't doing a darned thing, but at least treatment has begun.I have 2 oncologists: the one at Sloane Kettering (Dr. Kemeny) and another closer one in Princeton, NJ named Dr. Lee. I've seen Dr. Lee the past 2 weeks, and he is hopeful that since my side effects were not too bad they shouldn't get too much worse. There are 2 side effects I will eventually have to deal with: hair loss and neuropathy. I have LOTS of hair so am hoping I only lose some, but if need be, I'm preparing myself to have some fun with wigs. The neuropathy will occur when the Oxaliplatin is becoming too much for my system.White blood and platelet counts already dropped considerably after 1 treatment. That makes me a little nervous for future treatments. But I keep thinking I'm young and they will bounce back before my next treatment.

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Liver Infusion Pump?

Hello to the new and improved Kris, you have mustered up a winning attitude!I am so happy to see you found your white lace boxing gloves and are now going a few rounds. Good for you. You just show that CC who is boss. Wigs can be a lot of fun as our other Kris had showed us, from Sweden. She had ended up with a red one! I am hoping your side effects if any will be minimal. You go girl!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Liver Infusion Pump?

Kris....sure makes you think that the body does what it wants to do. Anyway, good luck on your decision of moving forward. Of course, we have tons of threads on the Gem/Cis combo and you can always read through some by using our own google search function. But, I also want to mention something I just recently became aware of. In fact, I noticed it posted at UCSF while accompanying my friend to a visit with a physician. It is supposed to be really helpful in re: to chemo induced hair loss. Take a look:http://www.thebaldtruth.com/hair-loss/p … hair-loss/If you so choose you will be the first to try this on our site. Either way, let us know how you are progressing. And, tons of love and support is coming your way.All my best wishes,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Liver Infusion Pump?

Marion:If I can try this, I'll be the first to try something else on this site.Hopefully this works better than the infusion pump does. Or my body, for that matter... actually I can't say that since I got thru the first chemo treatment a lot easier than expected!I will discuss this with my onc and get back to you. It seems like that will be SO COLD!! But going to Sloan Kettering, I would think they might have heard about the cold cap before. So we will see...

Kris

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Liver Infusion Pump?

Kris,I am glad to see your post because I had planned to post on this treatment. My tumor was found in July of 2009. After many tests to determine what we were dealing with my surgeon determined that it was inoperable (seems like most are). At that time it was the size of a baseball (doctor's description) about 8cm X 5cm - I couldn't find my exact measurements. I had surgery at UCSF Helen Diller Cancer Center to implant the infusion pump and run the line to the liver in December 2009. It is tough surgery, they create a pocket for the pump and run the line thru an artery. In my case the line actually went not just into the liver, but directly into my tumor. The pump is a Medtronic SynchroMed 11 8637-40. The chemo drug is FUDR.

I had the infusion pump from Dec 2009 thru August 2010. In that time my tumor shrunk to 3.9cm X2.6cm. In August 2010 my scan showed some nodules in my lungs that the doctors thought were probably cancer. I should have insisted on a pet scan, because it now appears that I have not had any cancer in my lungs, but I went on the usual cisplatin/gemzer chemo treatment until this month - my tumor did not grow on the systemic treatment, but it also did not shrink. So as of this month, I am back on the infusion, 2 weeks on the FUDR and two weeks on saline/heperin.

I did not have a lot of side effects with the FUDR, certainly not like the systemic chemo. There is some fatigue, but that is probably true with all cancer, and it is minimal. I have some sleep problems when I am on the FUDR, I tend to sleep for a few hours, up for a couple and back to sleep for couple. I did not lose any hair, but it got a funny texture - pretty minor compared with what most people go thru.

When we did this, my surgeon said this is old therapy - they hadn't used it in years - but it has worked for me. Right now I am feeling good. I will be happy to answer any questions that I can help you with. I don't look at this website a lot, so feel free to email me at cobbmkc@mchsi.com I am back on the pump because I felt it was a better option to shrink the tumor. Hope this helps.

I just realized that you had several other posts where you can't use the pump, so I am sorry I didn't notice them. But maybe this will help someone else.Karen Casey

Re: Liver Infusion Pump?

Hi Karen....wanted to chime in and welcome you to our site. We have not had anyone explain this treatment to us before therefore, thank you for taking the time to offer such detailed description. Karen, if you don't mind me asking how was it determined that the lung nodules are not cancerous? Most of all though, I am happy to know that you are feeling pretty good and the side effects you are experiencing are fairly minimal. I am wishing for continued success and am sending my warmest wishes your way,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Liver Infusion Pump?

Hi Marion,It was actually fairly complicated, but essentially, they just disappeared. every scan I have something show up in my lungs, but the next scan it is gone and there is something new. the scan that caused the doctors to have me go off the pump said Numerous enhancing pleural nodules throughout the right hemithorax consistent with metastatic disease.

Enlargement of a now moderate sized right pleural effusion, presumably malignant. This was in August 2010 and the fluid in the pleural effusion did not show cancer.

This last scan they found " Two new ill-defined peripheral left upper lobe pulmonary nodules, both seen on series 5, image 64, whose appearance is suggestive of atelectasis or mild inflammation" which everyone agrees is not cancer. These were not present 3 months ago on a scan , two other small nodules were, but they were gone on this latest scan. It just isn't acting like cancer typically acts, tho I know that you can never tell what cancer will do.

After my first cisplatin/genzar treatment, my system shut down and I ended up in ICU for 4 days. White blood cell count was so low they isolated me and gave me lots of antibiotics, and the nodules in the first scan just dissapeared, we are talking a few weeks. My brotheer in law is a pulmonary specialist and he said it was very unlikely that the nodules in my lung were cancer. But cancer doctors seemed sure it was cancer. So I can't prove it and I do wish I had insisted on a pet scan. when I went back on the pump last week, the nurse practioner who I have always worked with agreed it probably wasn't cancer after all. So I am speculating but I have kicked myself for not following up on it better.

Re: Liver Infusion Pump?

Hello Karen and welcome to our wonderful family. You have certainly had an interesting journey so far but so glad for the outcome. I also want to thank you for the defining post on the infusion pump and now our members have someone to ask about the procedure and etc. You have a great fighting attitude and I wish you the very best!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Liver Infusion Pump?

Karen:Thanks for explaining the pump better. As of right now my surgeon wants to reopen my incision and close off the vein leading out of my tumor. They did not see this earlier so I don't know what happened, but having a tumor that is not a "closed circuit" does not help when dealing with the pump. That will let the chemo out into my system which would not be good. I am happy to hear someone that has good news about the pump: it gives me hope that eventually I can get it working and shrink this tumor. My tumor is only about 6cmx6cm but is also inoperable as it surrounds the vena cava. Hopefully with chemo and maybe eventually the pump we can shrink it enough that it will be operable.I'm sorry to hear about your trials with the lungs. Unfortunately, from what I've read, they really don't know what cc will do. And at least they were being careful. I know that's not much of a comfort, but at least they aren't ignoring potential problems. Unfortunately, that means you had to go on systemic treatment. And I'm sorry you had such problems with the systemic treatment. But at least you are back on the pump, which seems to be doing wonders! I hope to hear back from you and hear even more good news!Kris

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Liver Infusion Pump?

Karen, we have a few similar postings re: the adverse affects of the Gem/Cis combo. I am so sorry that you had to experience it also. And thank you for explaining the disappearing nodule act. I am leaning toward the positive on this one and am crossing, fingers and toes for your brother-in law to be right with his opinion. Now, may the hep. pump promote a permanent disappearing act on your liver tumor.All my best wishes,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Liver Infusion Pump?

They found small nodules in my lungs as well on this scan a month ago. (3-4 mm) There is no proof this is cancer. It MIGHT be, but nodules like theese are often found when scanning peoples lungs. And then gone. Like said, it might be inflammation or other not dangerous things.

No matter whether you think that you can, or that you can´t, you´re right //Henry Ford

The information expressed is not medical advice. The discussion boards are not intended to replace the services of a trained health professional or to be a substitute for the medical advice of physicians or other healthcare providers. Read the full disclaimer.